tips for ketogenic diet for epilepsy

Keto Parents’ Advice for Families New to the Ketogenic Diet for Epilepsy

tips for ketogenic diet for epilepsyIs your family new to the ketogenic diet for the management of intractable epilepsy? If so, you may be looking for tips and suggestions to help you manage day-to-day. Oftentimes, the best advice comes from others who have been in your shoes. Using our social media accounts, we asked keto parents about what advice they would offer other families new to the ketogenic diet. Here is what they said*.

“Patience is key. So is persistence. It took 10 weeks of fine-tuning the diet ratio to completely stop our son’s seizures.”

“Simplicity! Don’t overwhelm yourself with a ton of recipes. Or recipes at all for that matter. Start with a few things while becoming familiar and expand as you feel comfortable. My son ate the same things nearly every day. Also, if you reach seizure freedom and it’s interrupted, don’t get discouraged!!! It’s the worst feeling ever but try to stay positive! My son started the diet at 3 and was on it for 2 years. He’s 15 now and seizure free.”

“Take your time, do your research, ask all the questions! This is a lifestyle not a quick fix. But it is totally worth every second 👌👌 My twins have been seizure free for over a year! Make it simple & as time goes on it gets easier! ♥♥♥”

“Don’t give up…work with dietitian and neurology to fine tune! I believe it works but one needs to be patient and work with your whole team!”

“It’s not as hard as you think”

“Take a deep breath, smile and buy a scale!!!!!”

“One step at a time.”

“Keep it simple, ask for help, be patient 💜💜”

“Go slow it’s a marathon not a sprint.”

“Never give up. Weigh and measure precisely.”

“Go to a place that has a keto clinic with a specially-trained dietitian and neurologist.”

For more tips on managing the ketogenic diet, check out these blog posts:
A Ketogenic Dietitian’s Tips for Families Getting Ready to Start the Ketogenic Diet
Time Management Tips for Keto Moms and Dads
Tips for Caregivers of Tube-fed Children & Adults on the Ketogenic Diet

-Mallory

*Results with the ketogenic diet for the management of epilepsy may vary. Talk to your healthcare professional.

The ketogenic diet for the management of intractable epilepsy should be used under medical supervision

Keto-friendly Thanksgiving & Holiday Recipes

Thanksgiving and holiday meals tend to be food-focused. This can be stressful when you or a loved one is on the ketogenic diet for the dietary management of intractable epilepsy. However, with KetoCal® and a little extra planning (okay, maybe a lot), you can put together a delicious and keto-friendly holiday feast. Reach out to your ketogenic dietitian far in advance for help putting together a meal that meets your calorie and ratio requirements. Here are some delicious and keto-friendly recipe ideas to get you started.

For Hanukkah recipe Ideas, see our previous post here.

Main Course:

Every family has their own traditions when it comes to main courses for holiday dinners.  Whether ham, beef, poultry or fish is served, be mindful of rubs or glazes that may contain carbohydrates.  You can use  butter or a high-fat sauce to even out the ketogenic ratio. For example, you could create a creamy gravy using heavy cream or Liquigen® (emulsified MCT oil), mixed with chicken or beef bouillon granules.

Most families serve turkey on Thanksgiving. If possible, opt for dark meat since it has a higher fat content.  If you’re up for something a little different, consider these turkey dishes that are already in a 3:1 ketogenic ratio:

Side Dishes:

For many, side dishes are the best part of the meal! Here are some tasty and keto-friendly options:

Chef Rachel’s Stuffing (3:1 recipe, 4:1 recipe)

Chef Rachel’s Green Bean Casserole (3:1 recipe, 4:1 recipe)

Chef Rachel’s Mashed Fauxtatoes (3:1 recipe, 4:1 recipe)

Chef Rachel’s Sweet Fauxtatoes (3:1 recipe, 4:1 recipe)

Cauliflower & Cheese (3:1 recipe, 4:1 recipe)

Dessert & Treats:

Who could forget the sweetest part? Whether you’re looking for a keto-friendly dessert for your holiday feast or holiday cookies to decorate, we’ve got you covered.

Crustless Pumpkin Pie (3:1 recipe)

Chef Rachel’s Apple Crisp (3:1 recipe, 4:1 recipe)

Basic Cookies (great for decorating with food coloring or “keto sprinkles” (granulated stevia with food coloring)) – (3:1 recipe, 4:1 recipe)

Gingerbread Cookies (3:1 recipe)

Chef Rachel’s Chocolate Chip Cookie (3:1 ratio)

Crème Brulee (3:1 recipe, 4:1 recipe, MAD recipe)

Chocolate Ice-cream (3:1 recipe, 4:1 recipe, MAD recipe)

Vanilla Ice-cream (3:1 recipe, 4:1 recipe)

Chocolate Cupcakes with Chocolate Frosting (3:1 recipe)

Vanilla Cake Pops (3:1 recipe)

Chocolate Cake Pops (3:1 recipe)

Strawberry Panna Cotta (3:1 recipe, 4:1 recipe, MAD recipe)

Chocolate Candy (2.87:1 recipe)

Chef Rachel’s Easy Chocolate Pudding (3:1 recipe)

 

For more tips on managing the holidays on the ketogenic diet, see our previous post here.

From all of us at KetoCal, we wish your family a very happy, healthy and tasty holiday season!

Mallory

KetoCal is a medical food and is intended for use under medical supervision.

The ketogenic diet for epilepsy should be used under medical supervision.

Ella’s Journey with Dravet Syndrome and the Ketogenic Diet

Ella on the way to an appointment with her ketogenic dietitian

Ella is 9 years old. She has an orange belt in tae kwon do and is very excited to be going to a new school for 3rd grade. The best way I can describe my daughter is that I wish everyone had the same approach to life and towards others as she does. She is optimistic, kind, and compassionate to anyone she meets. One would not expect such a positive or loving disposition from a child who has been through so much in such a short time.

Dravet Syndrome

We assumed Ella was healthy when she was born a hefty 8lbs 15ozs. She was very curious and social as an infant. Ella was around 10 months old when we realized something was very wrong. She had her first seizure during a nap. It lasted over 2 hours and required her to be intubated for 2 days. We were told it was due to high fever, and were convinced it was the last one she would ever have until she started having them several times a week. She had been intubated 4 times before we knew what we were dealing with. Ella was diagnosed with a genetic condition called Dravet Syndrome at 3 years old. It is a rare and catastrophic form of epilepsy that brings with it a host of medical complications ranging from global delays to chronic infection. It never goes away and it does not always improve over time.

The Ketogenic Diet

Ella had been prescribed several anti-epileptics with little to no noticeable seizure control. She was often in a drug-induced fog or extremely irritable. Her neurologist recommended we put her on the ketogenic diet.

The decision to place Ella on such a restrictive diet was not one that was taken lightly. After researching it, we at first felt overwhelmed and reluctant to try it because of the potential adverse effects involved (the most common problems are digestive issues, although these can usually be managed under the care of a keto dietitian). We also knew that managing the ketogenic diet would be a time commitment, and we struggled with the idea that Ella would not be able to eat food other children could eat. I remember wondering how I was going to keep up with it. I worked full time and had Ella and her younger sister. There were a lot of factors delaying us (my husband and I) from making the choice. However, we decided that we had more to gain by trying it. We knew that if it did not work, we could take Ella off of it and try something else. Fortunately, we met several families who had their children with Dravet Syndrome on the ketogenic diet who were experiencing fewer seizures. They shared their stories with us and it put us at ease.

Following a brief admission to the hospital in order to safely wean Ella onto the ketogenic diet, her dietitian sent us home with several recipes. Ella’s keto dietitian encouraged us to try KetoCal® products to help us find some meal alternatives. KetoCal offered several tasty options for kids such as ready-made shakes (plain or vanilla) and powder mixes that could be used in sweet or savory meals.

After 4 days of being on the keto diet, Ella used the bathroom on her own for the first time. Her speech and cognition improved dramatically, and more importantly she went 6 months without a seizure. It was the longest she had gone without one since 10 months old.

My daughter has been on the ketogenic diet for 5 and half years. Part of why keto has worked for Ella is that we make her a part of the process by empowering her as much as possible. We create new recipes often, based on her requests. This gives her a sense of control over what she eats. Seeing Ella smile after she tastes something new is a huge pay off.

Advice for Other Parents

If you have a child with Dravet Syndrome or intractable epilepsy, please consider the ketogenic diet as a low side-effect option for managing seizures. The diet may not be right for everyone, but it works wonders for so many with uncontrolled seizures. Please do not hesitate to speak with your neurologist about having a consultation with a keto dietitian, or even reaching out to members of the epilepsy and ketogenic diet community. There are many groups on Facebook where you can connect with other families who have tried the ketogenic diet, such as:

You can also find a ketogenic diet provider near you here: https://myketocal.com/kdcenters.aspx.

-Dana

I was paid by Nutricia for my time to write this blog, however, my opinions are my own.

KetoCal is a medical food and is intended for use under medical supervision.

The ketogenic diet for epilepsy should be used under medical supervision.

Please note that this is one family’s report of their experience with the ketogenic diet and may not be the experience of others. Individual results will vary. Please discuss the potential benefits of the ketogenic diet with your healthcare provider.

 

Interested in sharing you or your child’s ketogenic diet story? Email us at MyKetoCal@nutricia.com.